Seizure questions...

[nikolita]

Hi all...  I mostly lurk here, but have been around for a while.  I have a few questions and just need to 'talk' things out. 

I think I've posted before about my oldest son, who is 8, having what is like febrile seizures before.  To make a long story short, he was having 'episodes', where he would vomit and faint with maybe some eyes rolling back into his head a few times a year.  After much doctoring and a good cardiology check up it was half-assed determine that due to his lack of ability to sweat, his temp was rising causing these.  So, give him a salty diet, keep him hydrated and cool and you should be good.

Well, it turns out that isn't the case.  Last fall he had one at school and it wasn't hot out.  And friday he had two.  The first thing the teachers told me was that this one was different.   He got rigid, wouldn't bend when they tried to carry him out and was twitching.  My husband went and got him and he was fine by then but very tired.  They went home and he had the fainting and vomiting part of it.  Went to ER where they didn't really do much, and we see neurology again on Wednesday.  I should mention he's had an EEG and a sleep deprived EEG maybe 2 years ago and they came back negative or good.  We did start him on a seizure med on friday and will most likely be taking that for a year or two then taper and see what happens.

I don't really want to google anything, but just wondering if anyone else has anything similar.  Is it possible to find out a cause? 

I tried to not make this too long, so hopefully I didn't leave anything too important out.  And I'll be leaving work (gbcn at work FTW!!) soon and will check back again tomorrow.

Thank you everyone!

[sparkythelawyer]

My husband is prone to seizures in his sleep and has some relief with meds. It will take a while for the docs to find the right medication and dosage, so be patient. Sorry you are dealing with this!

[wavepool]

I'm sorry--that sounds scary and frustrating.
I don't have exact circumstances, but am also in the "having seizures, not exactly sure of the cause" situation with our son. He had his last one on Friday, followed by absence seizures, then had a clear eeg and just the explanation of a temperature spike (never saw a temp above 102.5, and that was the next day). None of the blood work showed anything, either.
Our son's neuro didn't start him on a med this time (he was on one until two months old), but we have a seizure rectal gun thing to use. Do you have one of those?
O's last one was more of a rigid and twitchy thing too, which was different than the first one, where he stopped breathing. No explanation of any of them, basically just a wait to see if it happens again thing.
Hope you get an answer!

[nikolita]

Oh my gosh... a seizure rectal gun?! There is not one thing that sounds fun about that! I'm sorry you are dealing with this as well.

[wavepool]

Mar 9, 2015 15:13:08 GMT -5 nikolita said:

Oh my gosh... a seizure rectal gun?! There is not one thing that sounds fun about that! I'm sorry you are dealing with this as well.

www.nlm.nih.gov/medlineplus/druginfo/meds/a605033.html

Not pleasant, but supposed to be very helpful!

[mslhb]

Sorry you are going through this. My DD has a seizure disorder. Hers started when she was 1.5 weeks old. She has been on medication since 4 months. 1st we were on trileptal and quickly switched to keppra. It can take awhile to find the right medication and right dosage. She has had a ton of EEG's and several MRI's and every single one has come back "normal".... which is pretty common. I think like 40% of the time there is no obvious cause for the seizures. She mainly has partial complex seizures which can secondarily generalize. Before my DD I had no seizure experience other then what you see on TV. I had absolutely no idea that there were so many different kinds. With my DD when she has what I call a 'small episode" they can be very subtle. When she was smaller I constantly had to ask myself whether it was a seizure or her just spacing out. My biggest advice is to trust your instincts. You know your kid best. Definitely keep a log of any episodes. Likely part of how your doctor will decide to adjust medication is based on your feedback/observations. This was tough for me at 1st. The 1st few seizures I was so freaked out that I certainly wasn't paying attention to which way her head tilted and her exact body movements... and the neurologist certainly asked!! PP mentioned the seizure gel shot, Diastat. We keep one in our house and have used it once. It is very easy to use. It is meant to stop a prolonged seizure or seizure cluster. Multiple trips to the ER for seizures gets expensive and old. Having the shot on hand when DD was young was a nice peace of mind. We tried weaning DD off her medication once when she was around 4. She started having seizures again so we are back on. Seems like as long as she is at the right dosage (as she gains weight we have to up it) she is 100% seizure free. Please let me know if you have any specific questions.

[nikolita]

mslhb - Thank you for your input.

DH and I were discussing things and hopefully the Keppra does the trick. Does it make your daughter drowsy? DS seems to be in a fog since started him. Do they build up a tolerance to that side effect?

Thank you again everyone!

[mslhb]

Mar 10, 2015 9:00:10 GMT -5 nikolita said:

mslhb - Thank you for your input.

DH and I were discussing things and hopefully the Keppra does the trick. Does it make your daughter drowsy? DS seems to be in a fog since started him. Do they build up a tolerance to that side effect?

Thank you again everyone!

With my DD it is really hard to know what side effects the Keppra has on her... she started as a baby so pretty much has been on it her whole life. She was fully off the medicine for around 4 months shwne we weaned at around age 4 and at that time I didn't notice a difference.

Is your DS taking Keppra in a pill or liquid form? DD still takes a liquid... twice a day. I assume at some point we will switch her to pills when she gets a little older. Just didn't know at what age I wanted to try to make the switch. 

[nikolita]

He is taking the liquid right now but I might switch it to the pill next time I refill. He's 8, I think he can handle a pill. Right now we're taking half of the prescribed dose (per medical advice) until we meet with neuro tomorrow since it was making him so tired. His teacher noticed yesterday he was 'out of it'.